“I feel so much
better today, I’ll go back to work”. Ah, those halcyon days before you had ME.
You were ill, you rested, you got better. Put simply, you had recovered.

So when a trial of treatments for people with ME/CFS reports
that many of them had “recovered” you would imagine shouts of joy throughout
the ME community. But joy there was none and for good reason. “Recovery” as
defined in the PACE Trial, involving the use of Cognitive Behaviour therapy
(CBT) and Graded Exercise Therapy (GET), is not what you think it is.

In medical trials there are ways of measuring your physical
abilities and the SF-36 Function Scale is one that’s often used. It’s useful in
comparing the burden of different diseases, differentiating the health benefits
produced by different treatments, and in screening individual patients.

A score of 85 or above on that scale indicates that an
adult, even one who was previously ill, is able to carry out most everyday
tasks. The Pace Trial took as patients, adults with CFS/ME who had a point
score of 65 or less, so they were clearly ill. They were given CBT and GET.

Now common sense suggests to me that if the treatments had
worked well, those patients would have recovered. Their SF36 score would be 85
or over and off to work they would go. Singing merrily as they went. Well, I
was wrong.

Originally PACE said that a score of 85 would indicate their
patients had recovered their function but later decided achieving a score of 60
was sufficient. So patients could enter the trial “severely disabled” with a
score of 65 or less and exit the trial “recovered” with a score of 60. Yes, you
read that correctly.

Some could be as ill at the end of their treatments as they
were when they started, yet, says PACE, they had “recovered” their physical
function.

PACE does a wonderful sleight of hand here by claiming that
as the fatigue score for patients showed improvement then that constituted
recovery. Imagine you have just finished treatment for an illness and you’re
asked: “How do you feel?” You might say: “I feel much better today thanks”.
Feeling “much better thanks” is, as we know, not the same as “recovered”.

If I still can’t go back to work, play football or score my
85 points, then I’m not sure I’d feel “recovered” even if I didn’t feel as
knackered as before.

Did PACE check their recovery measures by asking patients
scoring 60 if they had recovered? Well, blow me down with a feather, they did
not. Here’s a suggestion, dear researchers. Why not go back and ask those
patients if they can now do what they did before they were ill.

Why is this important to you? Because the treatment you get
from your GP is often based on trials. If those trial results are not founded
on common sense but on inappropriate formula on the wrong set of data, what use
are they? We live in a world where common sense rules, not in the world of PACE
where “recovery” is not what it seems.”

This article first appeared in ME Essential, the quarterly
magazine of The ME Association, in February 2014.A new article from Professor Malcolm Hooper -

About Me

I am a Christian, saved by grace alone through faith alone. I have had the neuroimmune disorder ME, Myalgic Encephalomyelitis, since 1991. From North Somerset, now in N. Ireland. Please see my website for further information about ME.